Kaden's Cystinosis Campaign
Donation protected
Cystinosis is a rare, incurable metabolic disease that afflicts only 500 children and young adults in the United States. The amino acid cystine accumulates and crystallizes in cells due to abnormal transport of the cystine. Without proper medical attention and consistent medication, this build up eventually destroys all the body’s organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system. Kaden is 1 of 3 African American Children currently diagnosed with this obstacle. Learn more here: Cystinosis Research Foundation
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My baby cousin Kaden Amari Thomas was born on January 12th, 2016--10 days before he was expected. His parents (my cousins Narlyn and her husband Kahlied), knew that Kaden was going to be special. Nine months before Kaden’s birth, Dad suddenly and tragically lost his sister. I witnessed first-hand how Kaden’s arrival filled this consuming crater of pain and sorrow from her passing away, with love and happiness for their entire family.
Unfortunately, at 6 months Kaden began throwing up frequently. Nervous, Mommy took him to the pediatrician, who then decided to send him to the E.R for more thorough diagnostics. Kaden was admitted for a hospital stay that lasted 40 days. Day after day specialists worked to diagnose Kaden; nephrologists, gastroenterologists, neurologists, geneticists and radiologists. For two weeks we all waited for blood work (that had been sent to San Diego for special tests) that test resulted in a diagnosis: Cystinosis.
Kaden is currently on a strict diet consisting of a high amount of water intake to counteract the dehydration caused by Cystinosis. He also takes about 8 different types of medications, some he needs as many as 6 times per day. Feeding tubes were surgically placed, as well as a gastric tube in his belly because he cannot receive his medicine orally just yet. The round the clocks meds and intense feeding schedule continues, but so does Kaden Amari’s resilience, smile and ability to do what his name means: FIGHT.
Narlyn and Kahlied are two of my favorite people in this world. They have changed their lives so much to tend to Kaden and Kameron’s needs and I just want to see how family and friends and (even strangers) can lend support and love when these parents need it most.
I am requesting that we all donate any resources, money, time, information, or emotional support, in order to help my cousin and her family through this difficult time. Monetary donations will be used for Kaden’s medical supplies and medication needs. In addition, the majority of funds will be donated to the Cystinosis Research Foundation, an amazing organization that has extended the lives of thousands of individuals suffering from Cystinosis through its funding of groundbreaking medical research and advancements.
Rare diseases continue to have rare cures until awareness and support can facilitate research, progress, and hope. Thank you so much in advance for your help and attention to our family.
Love,
Your Fellow Human Being
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My baby cousin Kaden Amari Thomas was born on January 12th, 2016--10 days before he was expected. His parents (my cousins Narlyn and her husband Kahlied), knew that Kaden was going to be special. Nine months before Kaden’s birth, Dad suddenly and tragically lost his sister. I witnessed first-hand how Kaden’s arrival filled this consuming crater of pain and sorrow from her passing away, with love and happiness for their entire family.Unfortunately, at 6 months Kaden began throwing up frequently. Nervous, Mommy took him to the pediatrician, who then decided to send him to the E.R for more thorough diagnostics. Kaden was admitted for a hospital stay that lasted 40 days. Day after day specialists worked to diagnose Kaden; nephrologists, gastroenterologists, neurologists, geneticists and radiologists. For two weeks we all waited for blood work (that had been sent to San Diego for special tests) that test resulted in a diagnosis: Cystinosis.
Kaden is currently on a strict diet consisting of a high amount of water intake to counteract the dehydration caused by Cystinosis. He also takes about 8 different types of medications, some he needs as many as 6 times per day. Feeding tubes were surgically placed, as well as a gastric tube in his belly because he cannot receive his medicine orally just yet. The round the clocks meds and intense feeding schedule continues, but so does Kaden Amari’s resilience, smile and ability to do what his name means: FIGHT.
Narlyn and Kahlied are two of my favorite people in this world. They have changed their lives so much to tend to Kaden and Kameron’s needs and I just want to see how family and friends and (even strangers) can lend support and love when these parents need it most. I am requesting that we all donate any resources, money, time, information, or emotional support, in order to help my cousin and her family through this difficult time. Monetary donations will be used for Kaden’s medical supplies and medication needs. In addition, the majority of funds will be donated to the Cystinosis Research Foundation, an amazing organization that has extended the lives of thousands of individuals suffering from Cystinosis through its funding of groundbreaking medical research and advancements. Rare diseases continue to have rare cures until awareness and support can facilitate research, progress, and hope. Thank you so much in advance for your help and attention to our family.
Love,
Your Fellow Human Being
Organizer and beneficiary
Danielle Coupet
Organizer
Aventura, FL
Narlyn Thomas
Beneficiary